I was diagnosed with ss in September. I have mouth,eye and severe fatigue. I have had Lupus for about15 years and now these new symptoms come up. I have bad thrush. I have severe burning in mouth. And lips. I take Salagen and methotrexate along with many other lupus meds. I can not taste or even had a desire to eat. Why eat if you can’t taste. I am hurting severely in my stomach. Could the thrush have spread throughout my system. I do swish and spit a mouth was for fungal infections. Any ideas ? Thanks
I just joined today because I saw your posting and so wanted to tell you that I may have discovered something that can help you. In 2011I was diagnosed with Psoraisis. In 2012 they added Sjogren's, Cutaneous (skin) Lupus (by biopsy) and Polymyositis (by biopsy). I don't think we're done with the diagnosing yet.
For at least 10 years prior to a positive test for Sjogrens - and tested at my request, I had complained to my GP that I was unusually exhausted, my mouth was so painful that it felt like it was on fire and I was scary-choking at least once a week. I had begun to fall every month or so - first fall shattered my shoulder, necessitating 2 surgeries. It was getting harder and harder to walk up a flight of stairs - nearing the top, I'd have to pull myself up the remaining steps with my arms using the bannister; there was no pain, I just couldn't do it. I kept telling her and I really think she thought I was a hypochondriac nut case.
I requested many, many times for help with my mouth pain. It was making my life miserable. I had multiple sores that would move around in my mouth - sides of my tongue, under my tongue, roof of my mouth, down my throat - agony. When I got the pain, many times I too thought it was Thrush, but Rxs had no effect. Eventually they'd go away for a while, but they'd always return, and each time they'd be with me for well over a month, Toothpaste burned incredibly - like pouring straight alcohol on it. Hard to talk without pain, hard to eat or swallow or drink without agony... for 4 to 6 weeks. MD kept saying that she didn't know what it was and kept writing Rxs for "Magic Mouthwash" which did nothing. I asked for a referral to an ENT specialist - he didn't know either, I asked my dentist, didn't know either. I felt it was hopeless and quit mentioning it. Every once in a while my GP would ask if I still had the mouth pain - and I said yes, but that I was just going to have to live with it, because no MD knew what it was. My difficulty walking up stairs (no pain involved) also was a real problem and another mystery, but when I insisted that I be tested for something for my legs, I was given an Xray of my knee = no arthritis, therefore no problem - that's another mystery.
Quite by accident, when seeing my terrific dermatologist about my Cutaneous Lupus last year, he asked if anything else was bothering me - and I told him that I was in much pain from these mouth ulcers that no one could diagnose - that day I'd counted them and there were 13! He looked in my mouth and said he did - he took a scraping, disappeared into his lab, and came out with the diagnosis = apthuous ulcers. He said it was a part of my Cutaneous Lupus! I never thought that they might be related to that! He gave me an RX for a gel that, when held to a sore, made it stop hurting. Progress, but with 13 of them, I'd probably overdose trying to numb them all. But still - Great - now it had a name! It's always nice to know the name of your enemy!
Last month I had gotten another new crop of mouth ulcers, and I was only on day 4, and knew I had a long time to go before I got a break for a few weeks. I was trying to get to sleep, but with so much mouth pain I was unsuccessful and desperate. I started trying to figure out if there was anything in the house I could try, so I started mentally reviewing everything I knew about them. I remembered that the entire alimentary canal, from mouth to tusch, is actually skin. That's why it was part of my Cutaneous Lupus. The stomach is part of the alimentary canal - when you have a 'burning stomach' (heart burn) you take an antacid. Could that be it? I went and got the bottle of TUMS (mine were = 750mg., Chewable Tablets - about the size of a quarter) and popped one in my mouth and let it dissolve - that took about 20 minutes. Don't chew it, because that will just bypasses the location of the pain and send the medecine on down to your stomach. You want to let it dissolve and make a kind of solution that coats the inside of your mouth. If you need a bit of water (when do we SS sufferers not need a drink ?) because you're dry, go ahead and take a sip just to get it started. Just hold the tablet in your mouth till it's all dissolved. When I got to that point, I analyzed - and there was a lot less pain, still a bit but definitely way less. I woke up about 4 hours later and put another one in my mouth - same technique (I was just making it up as I went along). After the second TUMS the PAIN WAS ALL GONE. It's been gone since then. There was one day when I kind of thought there might be one starting, so I did one TUMS again - all gone.
I'm not saying that this will work every time or even ever again, because I only used 2 TUMS about the 2nd week in January, but it's now 2/4 and I'm still OK. When I do get my next crop of the buggers, I will try it again. It may have just been a fluke, too. But every single other time I had them they never went away on day 4 - more like day 45. And I've had this trouble for at least 10 years, so you can imagine my delight.
If you do try it, I hope it works for you too. If I can help anyone eliminate that pain from their life, I'll be very happy. Good Luck & please let me know how it goes.
Interesting tips there Jambs. Thanks for sharing this. I've had trouble with mouth sores, and mine seem to be related to the extreme dryness. Never had them tested, but when I started using Evoxac, it pretty much disappeared, at least for now.
Good point, that there can be multiple reasons. If there hasn't already been a biopsy done for your mouth sores, it may be time Jinx. Definitely time to go back to the doctor on this.
Wow Jambs, thanks for taking the time to give me all this info. I really appreciate you care and concern. Look out Tums here I come. xxxxooo
Who would have guessed? Tums? This is great! Though there have been on-going suspicions that I also have SLE, as I continue to have many of the symptoms, 3 brain MRIs have come up clean, I do have mouth sores, that I also chalk up to Sjogren's. I thought for sure you were going to recommend a probiotic or prebiotic for thrush. Which of course is helpful.
Thanks for sharing 'your cure' with us! I'm going to go have a Tums right now!
Wishing you well,